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Friday, June 1, 2012

Getting Over The Humira Hump (With Lots Of Help)

Hopefully it will be smooth sailing from here on in. A girl can dream, right?

I’d be lying if I said that being on Humira is easy. Because it’s not. But it’s necessary if I want to be functional. At least that’s what I’m telling myself, to convince the irrational side of my brain that I can and should be injecting myself.

On Tuesday, my boyfriend asked me if “we” were injecting tomorrow. This should have steeled my nerves, knowing that I am not alone in this.

But when Wednesday rolled around, I was no longer feeling confident.

I hemmed and hawed for over an hour, only to have the thing go off by itself on the couch. Then I cried. Part of me thought we should be laughing because we injected the couch. Not literally. Unintentionally. But we did.

(Don’t our mothers always tell us not to cry over spilled milk? Does the same adage apply to spilled Humira?)

But the other part 0f me, the part of me that was totally emotionally fried did not find this funny at all. All that time. $750 down the drain just like that.

It put the score at me, 2, Humira, 2.

I wasn’t sure if my insurance would be willing to cover a replacement. It costs $1,700 a month for two doses. Would they be willing to shell that out again, because of my mistake? I hoped so because I couldn’t quite imagine what the next two weeks would have been like without it.

Just hope that we never have an issue like this, again. That the fridge doesn’t freeze or break. That the couch doesn’t get medicated again. Because I’m not sure my insurance company will be so kind in the future.

Anyway, my boyfriend went to the hospital with me. I’ve always said that the person who does that is definitely a keeper. Even when I was dating a doctor, there was always an excuse for why he wouldn’t go to appointments with me. But this guy, he signed on, especially considering I figured we could end up at the hospital anywhere from an hour to three or four.

So I go to the pharmacy. They told me to call my insurance company and come back, because if the pharmacy went to put it through, my insurance would reject it. So I called my insurance company, and they told me to go back to the pharmacy. I was totally ready to fight. But the pharmacy told me that my call did the trick, and the prescription went right through. Let’s just hope that the next time I need to get it filled, they don’t reject me.

Then I dragged my boyfriend up to the rheumatology clinic, to find a nurse who could give me the shot. At first, the clinic staff seemed like they weren’t going to let me see a nurse. Um, really? A physician in your clinic prescribed this medication. Again, I was ready for a fight. But they got a nurse, who spent a lot of time with us. She assumed that it was my first injection. And she was surprised that I hadn’t had any training in the office, and that I had requested the Humira Starter Kit myself, directly from Abbott, rather than being given it in the clinic.

She was awesome. Although she refused to give me the injection. She said I had to do it myself. So I did. She showed me other places on my leg where I can inject, and how to do it so that I don’t actually have to pinch the skin.

I think that all of this could have been avoided if a nurse would have sat down with me to begin with. But they didn’t. I ordered the started kit from Abbott myself. The first injection, which went the best so far, was all on me. I think when we told the nurse this, she was a bit taken aback.

It’s not that I’m incapable of injecting myself. It’s that I lost a lot of confidence and got a lot more nervous after sort of messing up the second injection. It’s made me gun shy.

I don’t want it to be that I worry and obsess for all of the days in between doses. That’s no way to live.

I have to be able to tell myself that 10 seconds of pain is worth two weeks of feeling pretty good. The rational side of me totally gets that. But the irrational side tells me that this is the worst pain that I’ve ever felt, that injecting myself is unnatural and that I shouldn’t do it, etc. You get the point. The irrational side totally wants to talk me out of it, while the rational side can push the button and be done with the whole thing quickly.

Baby steps. I have to set manageable goals for myself. And I have to celebrate when things go well. These days, that’s no small feat. If I’m not crying at the end, well, that’s a plus, too.

I’m learning that it’s okay not to be okay. It’s okay to be sad, or scared, or frustrated, as long as it doesn’t get in the way of trying to be healthy. It’s okay to cry. It’s okay to want my boyfriend to be there for hand-holding and moral support. It’s okay to ask for help.

I see now that the hemming and hawing is the problem because it adds more variables into the mix. If I can get in and get out, there’s less of a chance of things getting messed up or the pen accidentally going off when we’re not ready for it to.

This journey has been a rollercoaster. But it’s nice to know that, even at the level of hospital pharmacies, insurance companies, and rheumatology clinics, that there are people who are willing to help, and who are willing to recognize that being chronically ill is hard. It takes a toll, both physically and emotionally.

And it’s nice to know that I’m not alone on this journey, that there is someone willing to stand by my side, willing to fight for me, willing to console me and dry my tears, and willing to spend several hours in the hospital with me, when he doesn’t like hospitals or could have easily been doing something else. It’s something that I’ve wanted, but have never really had before.

4 comments:

You did awesome to go get replacement dose of Humira after you had trouble with the first one! I have been self-injecting Humira for a couple years now. I still don't like to do it. But I have a routine to how I do it, and just push through. You are right that the hemming and hawing has been messing you up. Now that you've been helped through doing it right, you can set up a routine (including where in the house you do it and when and what supplies you have beside you) and do it the same each time.Lots of people have a hard time with doing the shot. It does hurt. Every time. Once and awhile it hurts less, and then I wonder what I did that was better. But I don't seem to be able to replicate that.

But since it does make a difference in how I feel/function for the next couple weeks, and the alternatives are not better, I keep making myself do it.

This boyfriend definitely sounds like a keeper! This past February I ended up accidentally acquiring a boyfriend who is super helpful with all my "sick girl" stuff. It feels so weird in some way to have someone by my side instead of my ex-husband who could made a point of being a penishead or absent whenever I was seriously symptomatic. It definitely really helps to have someone there, so, I am so happy you have someone! Yay! As for injection, have you tried mindfullness meditation while injecting? I don't know if it would be helpful to you but, sometimes putting my mind where the pain will be/is makes it less scary. Just focusing on the moment makes it easier to deal with than tying it in with all the crappy emotions surrounding being sick/nonfunctional/whatever. At least for me I think some of the pain comes from the emotional dimensions. Hope the next round goes better for you. And thank you for continuing your blog. It always makes me feel less alone. ^.^

I've been on Humira since I was a freshman in college, I'm now a senior and I wish I could tell you that it gets easier but in all honesty it doesn't. I stall SO much. Nothing seems to help me do it faster and without stalling. So good luck with your Humira journey. The only advice I can tell you is that it hurts a little less if you don't do it cold, right out of the fridge. Let it sit out for a minute and get room temp and it might hurt a tiny bit less. Unfortunately, Humira hurts and there is no way around it. :( But good luck!

About Me

In April 2008, at the age of 22, I was diagnosed with lupus and rheumatoid arthritis. The Getting Closer To Myself blog is about a lot of things in my life, but focuses on my experiences with illness, in the hopes that my story will help others. I also have several other blogs that I maintain about various other aspects of my life.